Hi, I’m just wondering if anyone has burning in other parts of the body?
I have a flare up period where always exactly at 11pm every night my whole body starts to prick all over my skin like burning needles being stabbed all over me.
My eyes dry up and hurt, my ears hurt and feel pulsating, my right arm muscle is agony but worst of all, well actually not worst but worrying for me for some reason is from my right knee to halfway up my thigh is very uncomfortable burning of a different type. It feels like there is a thick jelly inside that burns. It feels like fluid but it’s not really swollen. Although it all started one night a year ago with jumping up in the middle of the night in agony and jumping out of bed rubbing my knee furiously as I didn’t know what it was. It felt like a big swollen jelly was inside. The swelling has never come back but the pain is there every day, more so at night. I’m at a loss to know what this is but my feeling is it’s inflammation throughout my body affecting different areas. Does anyone have any thoughts please? Thank you
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Hi, personalTagent, it’s very hard to explain these pains that we are going through, I am going through a really bad flare at the moment worst I have ever felt, I get the normal stabbing pains and ache all over, but with this flare I get a tingly prickly feeling down my spine, top of my legs, in my lower back and worse is in my stomach, weird I don’t get it when I go to bed only once I’m up but it never goes away, I can’t even find a word to explain it properly , I always say burning inside my body like a sting, it’s not like my body is burning like on fire and feels hot it’s actually inside, I think like you say a jelly fish! I would say get it checked at the doctors though, ASAP I keep a diary and have had it before 2020 but not this bad. Hoping my meds from the GP will kick in soon. I’m sure you will get lots of feed back on here though. Sending gentle hugs 🤗
Dear personal Agent so sorry to hear you are suffering with fibromyalgia it’s a terribly painful and debilitating condition I get pain all over my body the worst always in my hips lower back legs and hands and wrists. Just recently I have still got the pain in my shoulders spine ribs neck and back of my head it’s more in the neck to the back of the head burning prickling feels like I have no skin like an open wound and I cannot touch the area without feeling pain nothing seems to make it go away tried pain killers numbing cream heat pad have had this now for 2 months and it’s taking it’s toll. Doc can’t give me nerve pain tablets because I have a faulty heart circuit which give me a very fast Herat beat when it plays up. I sympathise with you sadly I don’t think anyone knows how to treat this condition.
You might use Google with the search parameters cardiac fibromyalgia ncbi. I don't have the research on this phone, but I found article after article about cardiac issues with fibromyalgia including one about Maitland spine mobilization, and another about a tilt table. the first is a treatment, and the second is proof that our hearts act differently from other people's, which is proof that we have a real condition, sometimes needed.
An article on the telo cipro sheet dated 1999 out of Italy substantiates that sleeping with copper improves our symptoms so that in the morning we feel more rested. I wear copper bracelets and leg supporters, both calves and four bracelets when sleeping and wondering the day. When I exercise, I take them off completely, and when I am busy after sundown I can get away with just wearing two and it seems better.
Because mine started when I had copper toxicity and took one Prilosec pill, I know the cause. But that's not everybody else's cause, the symptoms can have many causes both for the symptoms themselves and the fact that it's chronic. I had intermittent fibromyalgia when I was taking depakote and other medications every time my thyroid would go low, describing it as blood hum, bloodbuzz, and carbonated blood, but nobody knew what to make of it. Only when I got fibromyalgia full blown did I understand what had been happening.
for me, the burning in the palms and soles of the feet that lead to the feet peeling seems to be zinc related, and for me zinc aspartate or taking aspartic acid and zinc citrate, especially when I am taking apple cider vinegar as seems to be beneficial with meals, and I use the powder out of the capsules, usually a quarter to a half of a capsule is enough at this point. If my crotch is burning as well, then there's a magnesium deficiency. With my particular form, magnesium lysinate glycinate is safest because it doesn't reduce the amount my body too quickly the way the others can. I found three substances that remove it from the body but they remove it from the whole body and break apart the chemicals that it is in. I've found a treatment directly over the storage area, also known as the liver, that doesn't have nearly as bad in effect.
I still need to either exercise heavily to the point of exhaustion or exercise with apple cider vinegar to help my body adapt to the changes.
Emotional support seems to be huge.
Pmid 30192068 substantiates that provider engagement can bring our suicidal ideation to zero, when our normal suicide rate is over 10 times the average. I guess when my doctors tell me those are not your symptoms, they want my suicide risk to be 12 or more times the average.
Pmid 20182592 substantiates that chronic emotional and physical stress increases our cardiac issues. If provider engagement can bring our suicide ideation to zero, then the stress of provider invalidation causes cardiac issues in those of us who don't suicide.
The term social support as a search parameter shows many articles substantiating how important emotional support can be especially in people with illnesses like cancer and kidney problems. I guess us too.
there's something called sundown syndrome with dementia, having something to do with the circadian rhythm. I haven't found any article that puts the two together so far, but that is my experience.
So when the sun starts to sit and I feel weird or my heart starts acting up, I do a magnesium foot bath, with the form that comes from copper binding to Omeprazole (the bond is he reversible according to Dale and Rang's Pharmacology) I find that magnesium lysinate glycinate is safest. The others cause a change in the condition to rapidly. If you didn't take prilosec, the one magnesium that seems useless to me is magnesium oxide. Magnesium malate seems to help me build enzymes better, and epsom salts bring in sulfur as well as magnesium, so choose what works best for you. A foot bath that is fairly short in duration works best for me, as well as drinking spearmint tea, it doesn't take much for me. and with that, I put on my copper, for bracelets and two leg supports, and that very much helps me for the rest of the night.
If I can't get comfortable, I find that staying awake reorganizes my circadian rhythm, and while that's supposed to make oxidative stress worse and therefore probably are symptoms, there's times when it's necessary and then sleeping during the day works. Sleeping when the system is different and expects to run correctly when it isn't working correctly, maybe it can't see what it's supposed to be doing, anyway, for me sometimes sleeping during the day has been necessary.
I read repeatedly that red light therapy and sunlight are beneficial, and I do know that getting out in the sunlight and turning myself like a roast, 4 minutes on each side, seems to help. I suspect although I can't prove it that through the temples, and through the bone behind the eyes, I don't look at the sun but I do close my eyes and let the sun come through the eyelids, I believe it can actually get to the brain. Things work better when I do this, that's the bottom line.
My pain management doctor suggested that lactic acid is the chemical that is in both apple cider vinegar that is beneficial when I eat in small doses, I use the powder out of the capsules as being better for my body and take it with the zinc citrate to help realkalize the body. it's also what happens in the body with exercise to the point of exhaustion, which is also beneficial for me and has been described in various articles. It looks like being made homeless repeatedly in the first year of fibromyalgia, 2019, was beneficial, because I had to move my possession seven times after I got it. I'm trying to be thrilled about it.
Yoga, and my body states a 29 minute limit minimum and no maximum and no reason to go beyond the 29 minute limit for some activities, for yoga, exercise, and meditation. I can't always meditate when the cardiac issues are scary.
I have found copper to be beneficial but I know from my research that too much copper can cause the symptoms of fibromyalgia as well. So copper will be beneficial for some people, but not everyone. An article about metal allergic patients and surgical appliances and dental implants, which implies also shrapnel and bullets, suggested them as causes for some people for both fibromyalgia and chronic fatigue. Since these are other metals, copper would probably not be beneficial since they are all zinc antagonists. DL Watt wrote the nutritional relationships of zinc, it's a pdf. so if they require zinc to remove them, then copper would go high. For these people, copper sheets might be the opposite of beneficial and taking copper would be contraindicated.
I ran into research that I cannot substantiate here that explained that albumin is used in many things in the body including handling copper and zinc when they are received at the intestinal wall. All I know for certain is that my body likes to have egg white in a small amount maybe 20 minutes before I eat, or I can get away with directly before I eat these days after doing this on a regular basis. I believe that it is delivered that builds albumin, and I know mine is overworked. I also have different types of foods like lengua and cesos so that my body can have different nutrients available and not have to build them. My body goes through stages of what it likes, when it wants iron it likes cabeza. And bone marrow, that too.
a small amount of peas, and I mean small, balanced to one or two corn niblets, and when I've been healthier I've been able to keep the ratio with a larger quantity, along with onion and garlic in again fairly small quantities also seems to be beneficial. I ran into something somewhere that said that sauerkraut or kimchi is helpful, I don't remember where but it seems that a small amount squeezed out of the liquid is also beneficial.
Silica has been beneficial. The FDA says it isn't necessary, but I found lots of research substantiating otherwise that is on the other phone and I can't share it with you here as a result. Nevertheless, if I take copper, silica has been beneficial and the balance is critical for me. Silica is normally in natural water and what our bodies were built to function with, and it seems to do something for copper which I won't say because I can't substantiate it. But it sure works for me.
when my copper goes low, I get cold and use hot water bottles. I'm in love with my hot water bottles, but if I need them, then my copper is low or my ability to bind it is low, and for that I use silica and also gabapentin. I don't use pain medication, I use medications that get rid of the cause and I've let myself go too low in nutrients as a result. I can balance my cardiac symptoms using iron, copper, zinc, calcium, silica, and magnesium. If one is a little low now that I'm very deficient, then I start having symptoms, and if I can get the right one, my heart slows to a normal rate quite happily on its own. sometimes if my left arm hurts in a particular way, I need vitamin D, or I might need vitamin D and calcium.
Anyway, for the rest, I have to rebuild the article that was destroyed in December. I hope that these are things that you can investigate and that some of them might be useful to you.
Wow, I’m so sorry I didn’t properly reply to this. So much time and effort went into explaining and sharing and I’m sure it’s helped many others reading it too.
I was explaining earlier I dont seem to get notifications when a reply has been sent and I often forget to come back to this place.
I do very much appreciate your information and advice.
What we are going through is crazy really. I think more time and effort into understanding and research needs to go into fibromyalgia. I think the lack of answers is a huge thing. More answers would go a long way to earlier acceptance and beginning the process to try and self heal.
Hi I’ve been in a lot of pain I. The last two weeks and the top of my right hip and leg have had dreadful stabbing pain in hip and buttock and the pain in my leg is like it’s being smashed to bits with a sledge hammer. I’m seeing my doctor tomorrow as suffering from leg weakness because of the pain struggling to walk as leg gives way under means I almost fall over when that happens have had very little sleep because of the stabbing pain like someone is hammering a 6 inch nail into me.
"interesting" sensation... Helpful that you can describe it pretty clearly. I'm just not sure what you mean by "other" parts?
Here are my experiences: My "burning pricking skin" which I've always had a bit, was severely triggered by my Pfizer-jabs and have turned out to be part of an immune system over-reaction called MCAS, which is associated with histamine. As histamine usually has its peak at 3am, maybe yours is something similar. From this my sinuses incl. forehead also "burn", as well as in bigger MCAS flares my tongue and mouth (e.g. eating walnuts or directly after a jab).
Also I separate all my symptoms, treat my dry eyes if necessary with gentle gua sha (massaging, I use a jam lid). Don't know what I'd do about the ear. For arm muscles I do exercises, stretches and if necessary I'd also try acupressure (all via youtube).
For ideas on ear and thigh burning I'd consult knowledgeable physios like osteopaths some time. But I'd also symptom track these especially to see what activities/actions/poses I was doing before that. Personally I got lots of thigh pain in my first year of fibro and one of the first things that helped was putting a soft topper and also a small lambskin under my lower back and thighs. Interesting, but a bit risky, would also be to see what gentle short massage, e.g. with a massage gun, does. If it is inflammation it would make it worse, but if it's more due to some over-burdening the muscle, then it might help. Maybe youtube videos for thigh pain, incl. Meralgia paresthetica (even if it's not that) can help find out. Trying acupressure points would be less risky than a massage.
I also always thought my many oversensitivities etc. might be inflammation and my fibro something autoimmune. Now I know I also have MCAS I take many anti-inflammatory supps, except the spices, as I don't "stomach" those and I know that inflammation can just be the normal immune system overreacting, that doesn't necessarily make it autoimmune....
Hi JayCeon, I would like to pick your brains about gua sha massaging using a jam jar lid for dry eyes. I've never heard of this and suffer with terrible inflamed dry eyes. Thank you and take care ❤
Hi Aoibheann! Of course there are many other suggestions with eye drops, lasering etc. and I'd think it won't be just one thing that helps if yours is that severe....
Firstly being sure about the diagnosis is of course important, knowing it is or is not Sjögren's Syndrome isn't that important, and seeing it as part of a sicca syndrome is just a name, you'd still have to treat the symptom, but knowing eyelid mites (morning itching) are or aren't the cause is very helpful of course...
Gua sha will only be used gently, not the scarring type of course! Wasn't easy to find it again, but my favourite video is one by a Chinese woman speaking German - the automatic subtitles do help, altho "wrinkles" are changed to "rides" when I just tried it... (I usually quickly find good videos for all kinds of videos, but strangely not for this topic.)
Dry Eye Exercises:
a) warm with cupped hands, warmed by rubbing against each other, several times; If you click on this and b), it'll take you to each position in the video, but it's nice to watch it all, I find, she's so cute... youtu.be/-pCoCGT5NYU?t=109
d) Above TCM video goes on to show 3 acupressure points, something I ignored when I first found this video, but self-applied acupressure has been such an help - in an astonishing way, that I'd take this very seriously.
d) Fresh air(?)
e) Looking into the distance regularly!
(A good short video about 3 different causes of dry eyes, incl. mites, is this from a German TV programme youtu.be/MRlLOLNa3xc, where you can again turn an English automatic translation on.)
That's more picking my resources than my brains, so if you have further questions - my pleasure!
thanks to everyone here that replied to my initial post. I don’t seem to get notifications when someone has replied and fibro fog makes me forget to go and look right away! So apologies for that! I still have the same symptoms and more. Now diagnosed with Demodex Blepharitis so at least I know what the eye issue is. The videos on eye massage are really interesting. Thank you.
Wow, so "mites" wasn't completely wrong, hadn't ever heard of that before!
On a different, but maybe similar note - I've been struggling with my fingertips being sore and splitting & cracking, despite drinking 3L/d and overdosing the relevant vitamins (for other reasons), only reducing washing has got rid of the splits, for reducing the skin tension I spose I need the spring warmth. Just read oils like olive oil etc. here, that's one I forgot. firstderm.com/skin-fissures...
Now my lips have taken over, also splitting / cracking / hurting a lot, tried >10 different balms, medicinal creams, wondering if it's thyroid, but T4 isn't helping (yet?). Maybe olive oil too?...
To install something to compensate your/my fogginess 1 quick click under e-mail notifications in our setting can help ;-).
I've been having to prioritize other things the past few months, so I'm happy to focus on the most intense conversations, like this reply of yours, so thanks for coming back to it at all, whenever!
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Can anybody relate to these symptoms? Is this fibro, rheumatologist is undecided 
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does anyone suffer with burning sensation in their elbows and knees ?
leg pain fibromyalgia 
Excruciating burning pain
